St. John Fisher College Fisher Digital Publications Education Doctoral Ralph C. Wilson, Jr. School of Education 8-2015 Supporting Autism Spectrum Disorder Students With Their Academic and Social Transition at Community Colleges Tasheka Sutton-Young St. John Fisher College, ts01408@students.sjfc.edu How has open access to Fisher Digital Publications benefited you? Follow this and additional works at: http://fisherpub.sjfc.edu/education_etd Part of the Education Commons Recommended Citation Sutton-Young, Tasheka, "Supporting Autism Spectrum Disorder Students With Their Academic and Social Transition at Community Colleges" (2015). Education Doctoral. Paper 219. Please note that the Recommended Citation provides general citation information and may not be appropriate for your discipline. To receive help in creating a citation based on your discipline, please visit http://libguides.sjfc.edu/citations. This document is posted at http://fisherpub.sjfc.edu/education_etd/219 and is brought to you for free and open access by Fisher Digital Publications at St. John Fisher College. For more information, please contact fisherpub@sjfc.edu.
Supporting Autism Spectrum Disorder Students With Their Academic and Social Transition at Community Colleges Abstract Students diagnosed with autism spectrum disorder have been entering colleges and universities at an increased rate during the past 20 years. This increase necessitates greater awareness and the development of intentional interventions that support the needs of these students so they are able to make a transition from the K-12 environment to institutions of higher learning. Having a transition plan ahead of enrollment is favorable for these students. Many students with disabilities and their parents feel a college campus does not include the same level of support as provided in high school and they encounter challenges during that critical first-year transition of college, which often results in them dropping out (Ciccantelli, 2011). This study explored the services students with autism spectrum disorder receive at institutions of higher education, from the perspective of the Directors of offices of disability/accessibility. This study also proposes practices that assist these students so they can be successful at the postsecondary level. The findings from the study speak to the role parents, students, and advance preparations play in ensuring a favorable outcome for these students. It also emphasizes the students own responsibility to self-advocate for services and accommodations needed at the collegiate level. Degree Type Dissertation Degree Name Doctor of Education (EdD) Department Executive Leadership First Supervisor Josephine Moffett Second Supervisor Jerrold Stein Subject Categories Education This dissertation is available at Fisher Digital Publications: http://fisherpub.sjfc.edu/education_etd/219
Supporting Autism Spectrum Disorder Students With Their Academic and Social Transition at Community Colleges By Tasheka Sutton-Young Submitted in partial fulfillment of the requirements for the degree Ed.D. in Executive Leadership Supervised by Josephine Moffett, Ed.D. Committee Member Jerrold Stein, Ed.D. Ralph C. Wilson, Jr. School of Education St. John Fisher College August 2015
Copyright by Tasheka Sutton-Young 2015 ii
Dedication I dedicate this dissertation to my village! To all the people who loved and supported me throughout this journey, thank you is not enough. Praising my GOD, through Him all things are possible. I want to thank all the participants who shared their knowledge and expertise with me. For all that they do to serve a very special population of students, you are all my heroes. To my dissertation committee chair, Dr. Moffett, thank you for the guidance and the still voice in the storm; you are appreciated. To Dr. Stein, my committee member and mentor, words cannot describe how much your guidance and support means to me. I am humbled by your grace and wisdom each and every day. To my friends and family, thank you for understanding when I could not make it to family dinners, birthday parties, girls night out because I had homework you are all simply the best. Maria P, I hope you know how much I love you. I am so very proud of the young woman you are. Team Make It Happen, you are all phenomenal women in many ways. To Maynord, my loving husband, friend, and sounding board. Your support during this process was immeasurable. Thanks for understanding all the dates Mommy had to miss for school and for jumping in whenever and wherever needed. I am blessed to call you mine. Last but certainly not least to my daughters, Olivia and Ashley. You are my only reason for doing this dissertation. My love for you both is more than I can measure. Thank you for loving Mommy through this, although it was not always fun. You both made me tea in the winter, sang to me at night to keep me up, wrote me notes of encouragement, and asked me Mommy, can you be my doctor after you are done with iii
school? That made me laugh and you both make me so proud to be your Mommy! Ashley, autism spectrum disorder will not stop you from becoming the superstar you are. I live, dream, and believe because of you. iv
Biographical Sketch Tasheka Sutton-Young currently works as the Director for Student Life and Athletics at one of the Community Colleges within the City University of New York (CUNY) system. Mrs. Sutton-Young attended Iona College located in New Rochelle, New York for both her Bachelor and Master degrees in communication obtained in 1999 and 2001. She enrolled in the Ed.D. Program in Executive Leadership at St. John Fisher College in the summer of 2013. Her researched focused on Students with autism spectrum disorder and their transition to postsecondary education, specifically community colleges. Dr. Josephine Moffett and Dr. Jerrold Stein supervised her research. She is the mother to two beautiful daughters, one of whom has been diagnosed with autism spectrum disorder, and her passion for this topic comes from working day-to-day with her youngest daughter, which gives her intimate knowledge of this topic. This offers an insider perspective from the lens of a parent on the research. She is an advocate for girls with autism spectrum disorder, and works tirelessly to educate parents on services and support systems available to them. v
Abstract Students diagnosed with autism spectrum disorder have been entering colleges and universities at an increased rate during the past 20 years. This increase necessitates greater awareness and the development of intentional interventions that support the needs of these students so they are able to make a transition from the K-12 environment to institutions of higher learning. Having a transition plan ahead of enrollment is favorable for these students. Many students with disabilities and their parents feel a college campus does not include the same level of support as provided in high school and they encounter challenges during that critical first-year transition of college, which often results in them dropping out (Ciccantelli, 2011). This study explored the services students with autism spectrum disorder receive at institutions of higher education, from the perspective of the Directors of offices of disability/accessibility. This study also proposes practices that assist these students so they can be successful at the postsecondary level. The findings from the study speak to the role parents, students, and advance preparations play in ensuring a favorable outcome for these students. It also emphasizes the students own responsibility to self-advocate for services and accommodations needed at the collegiate level. vi
Table of Contents Dedication... ii Biographical Sketch... iii Abstract... iv Chapter 1: Introduction...1 Introduction...1 Problem Statement...5 Theoretical Rationale...6 Purpose of the Study...13 Research Questions...13 Statement of Significance...13 Definition of Terms...14 Summary...15 Chapter 2: Review of the Literature...16 Introduction and Purpose...16 Topic Analysis...16 Chapter 3: Research Design Methodology...34 Introduction...34 Positionality...36 Research Context...37 Research Participants...37 vii
Instruments Used in Data Collection...38 Procedures for Data Collection and Analysis...39 Chapter 4: Results...41 Introduction...41 Research Questions...42 Data Analysis and Findings...42 Summary of Results...48 Summary of Results with Research Questions...57 Chapter 5: Discussion...60 Introduction...60 Implications of Findings...61 Limitations...65 Recommendations...66 Conclusion...68 References...73 Appendix A...77 Appendix B...79 Appendix C...80 viii
List of Tables Item Title Page Table 4.1 Themes and Sub-Themes Emerging From the Data 46 Table 4.2 Number of Times Participants Referenced the High-level Themes 48 ix
List of Figures Item Title Page Figure 4.1 High-level Themes of Successful Transition 46 x
Chapter 1: Introduction Introduction While students with disabilities are being prepared for the academic expectations of college through their Individual Education Programs (IEPs), they are ill prepared for the social and psychological dimensions of their higher education experience (Wehman, 2008). The transition to college is stressful for many students, as Conley (2008) stated: The likelihood that students will make a successful transition to college is believed to be a function of their readiness, or the degree to which previous educational and personal experience have equipped them for the expectations and demands they will encounter in college (p. 3). Hadley (2011) pointed out that newly entering students must accustom themselves to the intellectual and social settings of a college environment. Their adjustment to college will require some level of physical and emotional separation from many people and places that were important to them during high school. Students are expected to adjust and accept the expectations of college life and the rules that accompany this experience (Hadley, 2011). Over the past 20 years, high school students with disabilities have been attending college and universities in large numbers, doubling their participation over two decades (Hadley, 2011). This increase has resulted in young people with disabilities enrolling in more challenging coursework to prepare them for life beyond secondary education. Despite laying the groundwork for the academic transition, students with disabilities face 1
a series of challenges as they try to plot a course to successful completion of a postsecondary education (Ciccantelli, 2011b). These adjustments pose a challenge for students with disabilities, who more often than not have a great deal of trouble understanding their disability and how to express their needs. Students may not know how their disability may affect them once they are in college (Hadley, 2011). This is where an Office of Accessibility plays an integral role in the transition process of these students. According to the Council for the Advancement of Standards in Higher Education (CAS) (2006), offices of accessibility/disability serve a significant function for the college and the students who require these services. These offices are there to ensure that students have access to all curricular and co-curricular opportunities throughout the institution. The Office of Accessibility must engage in student learning and development that are purposeful and holistic (CAS, 2006). CAS outlines 14 key principles for a disability support services area, emphasizing that the ultimate purpose of this area is fostering and enhancing student learning, development, and achievement and in general to promote good citizenship (Brown, 2012, p. 71). The Association on Higher Education and Disability (AHEAD) is consistent with the CAS standards and offers professionals an array of services and policy development to support students with disabilities in higher education (Brown, 2012). These two organizations have created a blueprint for an effective Office of Disability Services. AHEAD has eight standards that are intended to enhance services provided for college students with disabilities by directing program evaluation and development efforts, improving personal preparation and staff development, and 2
expanding the vision of disability services at the postsecondary level (Brown, 2012, p. 70). These organizations advise that there is mounting pressure on offices of disability services because of more students with special needs enrolling in college (Brown, 2012). Over the past 10 years, institutions of higher education (IHEs) have seen an increase in the number of students that their offices of accessibility support (Ciccantelli, 2011b). This increase may be attributed to a steady rise in autism spectrum disorder (ASD) diagnoses throughout the country. ASD refers to a group of neurodevelopmental disorders that affect development in the areas of social interaction, communication, and behavior (Adreon & Durocher, 2007, p. 272). These diagnostic criteria were changed in 2013 when the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (American Psychiatric Association, 2013) published a new definition for ASD. According to the manual, autism spectrum disorder is defined in terms of two categories: persistent impairment in reciprocal social communication and social interaction plus restricted, repetitive patterns of behavior. Both deficits present from early childhood (Baker, 2013, p. 1090). Along with the U.S. Department of Education, the Centers for Disease Control (CDC) in 2002 estimated that 1 out of every 150 children in the United States had ASD (VanBergeijk, Klin, & Volkmar, 2008). In 2009, the CDC reported that 1 in 110 children were diagnosed with ASD based on data collected in 2006. Three years later, the report stated that 1 in 88 children were diagnosed from data collected in 2008 (CDC, 2012). The numbers estimated from these reports showed that the prevalence of ASD diagnoses has increased 23% from 2006-2008 and 78% from 2002-2008 (CDC, 2012). 3
The reality is that a large number of college-bound students are diagnosed with ASD, and IHEs are challenged to meet the needs of these students. On the campus, this charge falls mostly to the offices of accessibility/disability within these institutions. These offices must do outreach and training because it is important for faculty and staff to create an academic and co-curricular support system for these students. Student involvement, social integration, and campus environment can contribute to a successful and satisfactory transition to college for this population (Ciccantelli, 2011a). Obtaining a postsecondary education offers many benefits to students with ASD, including the option to improve one s ability to earn a greater income and to create and build lifelong networks (Ciccantelli, 2011a; Gretzel & Wehman, 2005). For these reasons, students are seeking entry into these institutions. Many students with disabilities, however, may feel a college campus does not include the same level of support that is provided in high school (Ciccantelli, 2011a). Students with disabilities in college are covered by Section 504 of the Rehabilitation Act of 1973, which states that colleges need to provide reasonable accommodation for students with disabilities (Hadley, 2011), whereas K-12 public schools are mandated by the Americans with Disabilities Act (ADA) to educate and accommodate students with ASD. Both Section 504 and Title II of the Rehabilitation Act require school systems to provide accommodations and make modifications to address students with disabilities. There is a level of comfort during these years. Parents are seen as advocates and allies to help both their children and the children s teachers (Adreon & Durocher, 2007). During the early years, parents and educational personnel work collaboratively to ensure that students are meeting learning milestones. Using this model allows for structure and 4
organization, which is of the utmost importance for students with ASD (Ciccantelli, 2011a). The U.S. Department of Education (2014) stated that:... the IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability. Structure and organization do not extend to IHEs. The transition for many students with ASD from K-12 to college is very difficult. While K-12 schools work with parents and students to help children progress through the academic program, IHEs often provide less structure, less support, and fewer opportunities for parental engagement. Instead, students need to self-disclose their disability and serve as self-advocates (Kelly & Joseph, 2012). The ability to self-advocate is an important transition issue for students with ASD. Leaving the confines of a public school system to now reaching out for accommodations through effective communication is an area of weakness for this student population (Adreon & Durocher, 2007). Problem Statement There are differences between mandated services in the K-12 system and reasonable accommodations in higher education. These variances are problematic for students with ASD because one major issue with this population is effective communication. Mandated services in the K-12 system require an IEP as well as parental input. Reasonable accommodations in colleges and universities rely on a student to disclose and advocate for his or her needs. Are IHEs doing enough to ensure these students meet their goals? How are offices of accessibility prepared to handle the influx 5
of students with ASD coming to IHEs? Are these institutions effectively helping students with ASD transition into their first year of college? How do IHEs ascertain the needs of students who are diagnosed with ASD, and how do student support offices determine if they adequately offer services that address the needs of these students? Many colleges do not request a student to disclose his or her disability on the admission application; instead, many institutions wait for a student to be admitted to the college before asking about a disability, and many students do not disclose their disability. This process is particularly harmful to students with ASD because they are expected to use communication and interpersonal skills to make successful transitions. These skills are well documented as an area of weakness or limitation in this population of students (Hadley, 2011). Theoretical Rationale This study examined how offices of accessibility assist students with ASD transition to the college environment through the lens of a student development/psychosocial theory as well as two microtheories, Schlossberg s transition theory and Sanford s challenge and support theory. The study examined how offices of accessibility and their practitioners facilitate and oversee the process to provide support to these students in their transition from secondary to postsecondary education. Student development theory. Student development theory looks at the way a student grows, progresses, and increases his or her development capabilities as a direct result of enrolling in an IHE (Evans, Forney, Guido, Patton, & Renn, 2010). Student development theory includes three factors: change, growth, and development. Evans et al. suggested that Student Development is the application of human development concepts 6
in postsecondary settings so that everyone involved can master increasingly complex developmental tasks, achieve self-direction, and become interdependent (p. 6). Student development theories can be used to help better understand, support, and serve students. According to Evans et al. (2010), student development theory should be able to respond to four questions in order to be effective: 1. What interpersonal and intrapersonal changes occur while the student is in college? 2. What factors lead to this development? 3. What aspects of the college environment encourage or retard growth? 4. What developmental outcomes should we strive to achieve in college? (p. 7) Student development theories can be categorized under three major lenses. The first, the psychosocial theory lens, looks at the interpersonal and identity development of students. The cognitive-structural lens illustrates changes in the way students make decisions. Finally, the student development theory of typology looks at how students view and relate to the world around them (Evans, Forney, & Guido-DiBrito, 1998). Evans et al. (2010) stated that the student development lens helps educators view students in context and gives suggestions for how to provide guidance both in and out of the classroom. Astin s involvement theory I-E-O model. Alexandra Astin (1977), author of Four Critical Years, addressed the need for students to be involved in their community in order to be successful in college. During a 10-year nationwide longitudinal study of student development that looked at student outcomes and attitudes, Astin developed a model for use by professionals and policymakers to help create programs that support 7
positive student growth and development. The main notion of Astin s theory was built on three key components: the Individual (I), the Environment (E), and their Outcomes (O). Astin spoke to the change and development that take place in a student as a result of being on a college campus and being engaged. The I emphasizes the Individual and what he or she brings to a campus unique demographics, backgrounds, and previous experiences. The E speaks to the environment and all the experiences that a student undergoes during his or her college tenure most importantly, the experiences to which a college or university deliberately and intentionally exposes students. The O is for outcomes, which take into account the result or change the individual manifests after being exposed to environmental variables. Schlossberg s transition theory. Several theories have contributed to the student development framework. This study focused on the transition to college life. Nancy Schlossberg s transition theory tackled and provided insight into elements of transition, looking at the individual, the environment, and the support systems in place during a transition period (Evans et al., 2010). Of the three student development theories, Schlossberg s theory can be viewed through the psychosocial lens. Schlossberg believed there was a need to develop this framework that would facilitate an understanding of adults in transition and aid them in connecting to the help they needed to cope with the ordinary and extraordinary process of living (Evans et al., 2010, p. 213). Drawing from other researchers such as Levision (1978, in Evans et al., 2010) and Neugarten (1979, in Evans et al., 2010), Schlossberg created an integrated theory which expanded the student development framework. 8
Schlossberg s transition theory, deriving from crisis theory, examined the elements that comprise a transition, including different forms of transition and the process and factors that contribute to a transition. Schlossberg presented the transition process as having a three-part module: approaching change, taking stock, and taking charge (Evans et al., 2010; Schlossberg, 1984). During the taking stock phase, Schlossberg introduced the 4 S s in her view of transition: situation, self, support, and strategies. The 4 S system rests on many assumptions: while no one factor is essential for coping with change, many factors play a role in a person s situation, support, self, and strategies (Chickering & Schlossberg, 1995). Chickering and Schlossberg (1995) pointed out that transition is ever-changing and the resources or deficits a person may have in the 4 S s will change over time. Deficits can turn into resources and resources can turn into deficits during a transition. When taking stock, the situation aspect evaluates the individual s situation and considers the following factors during transition: 9
1. Trigger, or what brought about this transition; 2. Timing, or whether the transition was viewed as having good or bad timing; 3. Control, or what is in the control of the individual undergoing the transition; 4. Role Change, or whether a role change is happening. Is it a loss or a gain to the individual? and 5. Duration, or is the transition seen as permanent, temporary, or uncertain? Previous experience with a similar transition, concurrent stress, and an assessment of who or what is looked upon as accountable for the transition also plays a role. (Evans et al., 2010; Schlossberg, 1984) The second S in Schlossberg s system, Self, looks at the importance of personal and demographic characteristics and how they influence a person s view of life. Support, the third S in the model, looks at social support for the person in transition and examines intimate relationships, family, friends, and institutions. Strategies, the fourth and final S, describes the coping responses one would use during a transition. Schlossberg divided this concept into three categories: those who modify a situation, those who control the problem, and those who aid in managing the stress in the aftermath. During this phase, individuals also use coping modes, which include information seeking, direct action, inhibition of action, and intrapsychic behavior (Chickering & Schlossberg, 1995; Evans et al., 2010). Evans et al. (2010) explained taking charge by using the terminology of moving in, moving through, and moving out to explain phases of transition. Working with Goodman (1995), Schlossberg also defined transition as an event or a nonevent that produces change in relationships, roles, habits, and expectations. Transition can include 10
both positive and negative experiences for an individual during the process. Researchers have used this transition theory to explain friendsickness, which is caused by moving away from friends and family during the first-year experience (Crissman Ishler, 2004; Schlossberg, 1984). Others have used the theory to view shifts in student behavior during the transition from senior year in high school to the first year of college (Crissman Ishler, 2004). Schlossberg presented a framework in which to understand college students and their movement through their transitional phases for the adult learner. The framework is comprehensive and integrative, and draws from other theoretical backgrounds. The theory relies on the individual s perspective of transition and development. While the theory is widely known and used by student affairs professionals, Evans et al. (2010) emphasized criticisms of Schlossberg s theory and stated its complexities. Pointing out the lack of formal assessment tools has given researchers reasons to pause when contemplating ways to test the merits of the theory. There is a need to examine the theory through the eyes of a more diverse student population, particularly students with disabilities. The critical nature of IHE support for students with ASD is enhanced by another common characteristic of this group of students: they often have incredible difficulties with transitions (VanBergeijk et al., 2008). These students need a great deal of time to prepare for any changes. To ensure that this transition takes place successfully, the Individuals with Disabilities Education Act (IDEA) also dictated that students in special education must be provided with appropriate transition services with an outcome-based 11
model (Krell & Perusse, 2012). A college readiness blueprint, including a strong transition plan, is essential to the successful outcome of students in the ASD population. Sanford s challenge and support theory. Creating a plan for ASD students during their transition from secondary to postsecondary education is significant to their adjustment; providing support during this time is of the utmost importance (Hadley, 2011). One of the first scholars to address the relationship between a college environment and a student s transition to young adulthood was psychologist Nevitt Sanford (Evans et al., 1998). Sanford discussed the process of development in two ways: (1) Cycles of differentiation and integration and (2) Balancing support and challenge (Evans et al., 1998, p. 7). Sanford argued that a college environment should be a developmental community where students face both challenges and support. Challenge and support focus on person-environment interaction with three developmental conditions: readiness, challenge, and support. Sanford stated that the environment plays a pivotal role in a person s ability to be successful. The ultimate outcome is to find the range of optimal dissonance in a person s environment. The environment cannot present too many challenges for an individual; this may lead to regression and allow for less adaptive modes of behavior. If the environment seems too challenging, individuals may want to escape or ignore the situation. On the other hand, if the environment seems less challenging or easy, an individual may feel safe and satisfied with the situation, but does not develop in that atmosphere (Evans et al., 2010). Readiness emphasizes that people cannot demonstrate certain behaviors until they are ready in their own time. This phase can be a result of internal maturation or of environmental conditions (Evans et al., 1998). 12
Like the E in Astin s model, Sanford s microtheory of challenge and support postulates that the ability to handle challenges is a direct function of how much support is available for an individual. Colleges and universities should make students and parents aware of the support services that are offered to students to help make the transition (Andreon & Durocher, 2007). Critics have suggested that determining the balance between support and challenge is difficult in any setting; therefore, users of any student development theories need to view each student as an individual, not a subject. Because life is complex, theories do not and cannot explain all behaviors. Practitioners should be mindful that theory cannot be an accurate description of any specific reality, but only an approximate representation of many (Evans et al., 1998, p. 29). The transition from K-12 to an IHE is daunting and overwhelming for all students. That pressure is magnified for an ASD student, for whom communication is a struggle (Ciccantelli, 2011a). The American Institutes for Research (2010) pointed out that the attrition rate of first-year students falls between 30% and 50%, while the U.S. Department of Education (2014) science training indicated that first-year students were twice more likely to drop out of school than their second-year counterparts. Attrition of students with and without disabilities is important to IHEs for many reasons. O Keefe (2013) indicated that $6.18 billion in subsidies were paid to colleges and universities to fund students who dropped out at one year. An additional $2.9 billion in state and federal grants were distributed to students who dropped out in the first year. Students with disabilities are listed as at risk for dropout (Heisserer & Parette, 2002). Therefore, it is of the utmost importance that IHEs do their best to ensure the safety, comfort, and support 13
for students with disabilities and this must be a priority for college administrators (Andreon & Durocher, 2007). Purpose of the Study The purpose of this study was to examine, using a qualitative method approach, current accommodations provided to ASD students during their transition year from secondary to postsecondary institutions through offices of accessibility services. The goal of the study was to provide offices of accessibility with an avenue to ensure that this growing population of college students is served appropriately so they are retained and graduate. This includes awareness of reasonable accommodations to students with ASD and ways to improve services to this student population in IHEs. Research Questions Four research questions guided this study: 1. What factors contribute to the retention of first-year College students who present with ASD? 2. What services and support systems do students with ASD need to help them with their entry and transition to college? 3. What services and support systems do students with ASD need to help them succeed during their first year in college? 4. What are the best practices that college campuses utilize in order to help ASD students transition to college so they are more likely to succeed and complete? Statement of Significance The population of students with ASD seeking postsecondary education is growing. IHEs need to offer them support to help them acclimate and succeed. Current 14
research promotes the need to integrate students with ASD into the fabric of campus life. Trends suggest that while the student population is increasing, there is limited information on how to support their unique needs (Ciccantelli, 2011b; Hadley, 2011). This study sought the perspectives of staff members from offices of disability support services/accessibility to investigate factors that contribute to successful transition to college for students with ASD. Definition of Terms This section addresses many of the terms used in the dissertation. The definitions offer meanings for words or phrases leading to understanding the context in which these terms are used. ADA: Americans with Disabilities Act legislation that provides protection for those with a disability and allows them to be educated and employed without discrimination. ASD: Autism spectrum disorder. CAS: Council for the Advancement of Standards in Higher Education this Council offers standards for many areas in higher education and gives benchmarks of best practices of operation for Student Service areas. CDC: Centers for Disease Control. DSM-5: Diagnostics and Statistical Manual of Mental Disorders (5th version) serves as the universal authority for psychiatric diagnosis and treatment recommendations. The DSM offers classifications for those on the Autism spectrum. 15
FERPA: Family Educational Rights and Privacy Act this law protects the privacy of students education records. These rights transfer to the student once the student reaches 18 or attends school beyond high school. IDEA: Individuals with Disabilities Education Act legislation that ensures that students with a disability are provided with a Free Appropriate Public Education (FAPE). IEP: Individual Education Program mandated by IDEA that each student who presents with a disability must have an individualized plan tailored to him or her that defines objectives for that student to reach his or her educational goals. IHE: Institutions of higher education. Summary Colleges and universities are mandated by Section 504 of the Rehabilitation Act (Hadley, 2011) to provide equal access to students with disabilities. They commit financial and human resources to support offices of accessibility so that these offices can help students with ASD make a smoother transition to college. However, these offices cannot accomplish this goal alone. They need to invite and engage faculty, other student support services, and student peers to help support their mission (Korbel, Lucia, Wenzel, & Anderson, 2011). Understanding the phases of transition for students during the first-year experience can be valuable to IHEs regarding retention and student development. Ensuring that students are successful during their transition is a balancing act for both the individual and the institution. Some student populations may need more support than others. Creating a transition plan grounded in theory for students with ASD will give practitioners the ability to understand better the transition that students undergo while 16
moving into, through, and out of higher education arenas. The campus environment can be more welcoming to students when they feel safe, supported, and encouraged as individuals, and where their disabilities can be seen as part of the diverse fabric of campus life (Hadley, 2011). Chapter 2 provides a topical review of the literature relevant to the research. Chapter 3 describes the research methodology. Chapter 4 presents the findings of the study, and chapter 5 discusses the interpretation of results described in chapter 4. 17
Chapter 2: Review of the Literature Introduction and Purpose Over the past 10 years, increased attention has been given to the growing rates of diagnoses of autism. What is autism? How do we treat it? What is the cause? To address these questions, IHEs must understand the spectrum. Adreon and Durocher (2007) defined the spectrum as a continuum of symptoms that can occur in any combination that affects the individual through development in social integration, communication, or behavior. Autism spectrum disorder (ASD) refers to a group of developmental disabilities characterized by impairments in the areas of social interaction and communication, and the presence of stereotyped behaviors that can be restrictive and repetitive (Adreon & Durocher, 2007; CDC, 2012). ASD affects individuals in different ways and varies in a scale of severity. IHEs face many day-to-day challenges to meet all student needs. This analysis of the literature covers relevant research studies that have examined students with ASD and their transition to college. The present research focused on the services provided by offices of accessibility to students with ASD in IHEs while looking at factors that lead to a successful transition. This study addressed the concern for meeting the needs of students with developmental disabilities transitioning to college. Topic Analysis This research was a qualitative study working from a constructivist framework. It involved looking at students with ASD and examining how offices of 18
accessibility/disability can assist these students as they transition to the college environment. The research was framed by the lens of a student development/psychosocial theory (Schuh, Jones, & Harper, 2010) and looked at Astin s I-E-O model (individual, environment, outcome) as well as two microtheories: Schlossberg s transition theory and Sanford s challenge and support theory. A historical look at supporting students with special needs. The history of disability support services in higher education has gone through its adolescence phase and is now moving into adulthood, according to Madaus (2011). Over the past 30 years, the field of accessibility has expanded in higher education to become its own area within most Student Affairs divisions. Madaus reported that these offices on a college campus support an estimated 11% of all students in higher education. In 1864, President Abraham Lincoln signed into law an authorization to establish a college division at the Columbia Institution for the Deaf and Dumb (Madaus, 2011). After this first act to support those with special needs, the federal government at the end of World War I passed the Vocational Rehabilitation Act of 1918. That Act led to assistance for a small number of veterans with disabilities (Chatterjee & Mitra, 1998; Madaus, 2011). It was not until 1944 when the Serviceman s Readjustment Act, most commonly known as the GI Bill of Rights, was passed that the government provided $500 per year to qualified veterans for educational expenses, depending on years of service (Madaus, 2011). After the passing of this bill and the return home of servicemen, veteran enrollment in colleges ballooned to 52% of all college students in 1946. The number of veterans returning to college also increased the number of people attending college with a disability. This created the need for a unit to provide services on campus to 19
meet the needs of these students, resulting in the creation of many offices for Disability Support Services (DSS) on college campuses (Madaus, 2011). College DSS programs continued to develop and expand services after both World War II and the Korean War with the return of more veterans and their continued enrollment into colleges. With this growth, colleges and universities created special facilities for the physically handicapped which provided outreach and services to these students. During this period, DSS became a nationwide agenda item (Chatterjee & Mitra, 1998; Madaus, 2011), but until the 1960s, much of the conversation on disability concerned physical disabilities. In 1963, Dr. Samuel Kirk coined the term learning disabilities, and by 1968, the U.S. government was using the term as a category of disability for students in the K-12 school system (Madaus, 2011). With this new category, services were developed for students with this diagnosis and the Education of All Handicapped Children Act (EHA) was passed in 1975. With this new piece of legislation, the government required each child with special needs in the K-12 environment to have an Individualized Education Program (IEP). These plans would help set goals for a student s development and required periodic assessment (Madaus, 2011). Even with these changes occurring within the K-12 arena, the pathway to postsecondary education was still not a clear one for students with disabilities. Special education laws. Over the past two decades, the U.S. Department of Education and the U.S. government have put much effort into making postsecondary education accessible for children with disabilities. However, there continues to be a need 20
for legislation to help students who want to transition from high school to IHEs (Muenke, 2011). In 1973, Congress passed the Vocational Rehabilitation Act, which stated that any program receiving federal funding could not discriminate against individuals with disabilities (Ciccantelli, 2011b; VanBergeijk et al., 2008). Congress then passed Public Law 94-142 (P.L. 94-142), called the Education of All Handicapped Children Act (EHA), which provided children with a public education (Ciccantelli, 2011b). In 1990, the P.L. 94-142 Act was reauthorized as the Individuals with Disabilities Education Act (IDEA) to ensure that children with disabilities received equal access to educational institutions. While the law stressed equal treatment in federally funded programs, IDEA highlighted the fact that Public schools are required to provide free, appropriate public education (FAPE) from 3 through high school or age 21, whichever comes first (United States Department of Education, 2014). States must create plans to address the needs of students with disabilities and provide them with a free and appropriate education regardless of the severity of their disability, in order to be in compliance for receiving federal funds (Andreon & Durocher, 2007; Ciccantelli, 2011b). Along with the reauthorization of EHA, Congress also renamed the Vocational Rehabilitation Act in 1990 to what is now known as the Americans with Disabilities Act (ADA). IDEA covers a student until he or she receives a high school degree (VanBergeijk et al., 2008), whereas ADA outlines how colleges and universities provide services to students with disabilities. In 2004, IDEA was reauthorized again as the Individuals with Disabilities Education Improvement Act (IDEIA), and in 2008, ADA 21
was reauthorized as the Americans with Disabilities Act Amendments Act (ADAAA) (Ciccantelli, 2011b). Section 504, section E of the Act, speaks directly to postsecondary education and requires both public and private institutions to consider the application of students with disabilities and provide them with reasonable accommodations (Madaus, 2011). Reasonable accommodations are required as long as they are not a financial burden to an institution. These accommodations must be in the form of adjustments, program modifications, and auxiliary aids that allow a student to show his or her ability to be successful (Ciccatelli, 2011a; Madaus, 2011). Another law that changed the rules of engagement for students attending IHEs was the Family Educational Rights and Privacy Act (FERPA), P.L. 93-380. Established in 1974, this federal law protects the privacy of a student s education records from elementary through college institutions that receive funding from the federal government (Ciccantelli, 2011a; Dente & Coles, 2012). These rights are afforded to the parents of the student until he or she, regardless of age, has enrolled in an IHE. When students enroll in college, they must give written permission to release any information about their educational records. This change plays an integral part in the student s experience because parents no longer serve as the primary advocate and voice for the student (Muenke, 2011). After 1990, the number of students presenting with disabilities in IHEs blossomed across the country (Dente & Coles, 2012), which meant an increase in students needing services on campuses. Autism spectrum disorder. The term autism turned 70 years old in 2013, with new diagnostic criteria from the DSM-5. In 1943, Dr. Leo Kanner, a child psychiatrist at 22
Johns Hopkins University, proposed the diagnosis of autism in a paper (Grandin & Panek, 2013). Kanner published his paper called Autistic Disturbances of Affective Contact in a journal entitled Nervous Child. In this paper, he described 11 children who shared the same set of symptoms, including delayed echolalia, a desire to maintain sameness, and the need for solitude and aloneness. Many of these young people also had exceptional memory skills (Baker, 2013; Grandin & Panek, 2013). Kanner noted as well that the autistic behaviors of the children seemed to be present at an early age (Gradin & Panek, 2013). The word autistic was first used to describe symptoms of schizophrenic patients who rejected reality. Kanner and many other psychoanalysts subscribed to the notion that autism represented an infant s response to a cold and distant mother (Gradin & Panek, 2013). During the 1950s and 1960s, this belief was accepted as an emotional disturbance in parent-child psychodynamics (Baker, 2013). In 1980, the DSM-III listed infantile autism as a category called pervasive developmental disorders (PDD). The five categories are Pervasive Development Disorders-Not Otherwise Specified (PDD-NOS), Rett s Syndrome, Childhood Disintegrative Disorder (CDD), Asperger Syndrome, and Autistic Disorder (Wehman, 2008). Infantile autism was distinct from schizophrenia. The main thread of the diagnosis was lack of responsiveness to other people, gross impairments in language and communicative skills, and bizarre responses to various aspects of the environment, all onset before 30 months of age (Baker, 2013; Grandin & Panek, 2013). In 1987, a revision was made to DSM-III, changing it to DSM-III-R. In this revision, the name of the diagnosis changed from infantile autism to autistic disorder, 23
which required a child to meet 8 out of the 16 criteria divided into three domains of social interaction, communication, and restricted interest of activities (Baker, 2013). DSM-IV was published in 1994 and DSM-IV-TR in 2002; both further defined the complex criteria of autistic disorder and expanded PDD to five, including Asperger s Disorder (Baker, 2013). As Kanner was trying to define autism, Dr. Hans Asperger, a pediatrician, was conducting similar research in Austria. Asperger identified a group of children who were not able to form friendships, had one-sided conversations, and lacked empathy. These children would speak for hours on their favorite subjects and were well versed in the topics they spoke of (Grandin & Panek, 2013). Published in German, Asperger s work was not known widely in the United States until the early 1980s when an English doctor, Lorna Wing, changed the term from Autistic Psychopathy to Asperger Syndrome, due to the negative association with the word psychopathy (Ciccantelli, 2011b). In May of 2013, the criteria for autism changed in the DSM-5 to the following: Autism Spectrum Disorder 299.00 (F84.0) Diagnostic Criteria Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text): 1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions. 24
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication. 3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers (American Psychiatric Association, 2013, p.50). The DSM-5 published in 2013 has moved to a more rigorous definition of autism. It has eliminated PDD-NOS, Asperger s disorder, and other subcategories for ASD (Baker, 2013). Taylor and Colvin (2013) described students on the spectrum as being perceived as having disruptive or culturally deemed inappropriate behaviors, social or communicative limitations, and a limited ability to understand other people (p. 10). They lack the ability to interpret others thoughts and feelings. ASD students can also display stereotypical behaviors that are routine or repetitive in nature (Taylor & Colvin, 2013). Prevalence. Along with the U.S. Department of Education, the CDC estimated that 1 out of every 150 children in the United States had ASD in 2002 (VanBergeijk et al., 2008). In 2009, the CDC reported that 1 in 110 children were diagnosed with ASD, based on data collected in 2006. Three years later, the reports stated 1 in 88 children were diagnosed, from data collected in 2008 (CDC, 2012). The numbers estimated from these reports showed that the prevalence of ASD increased 23% over a two-year period from 25